Speaking More of Speaking More

Sorry for the wait. I would have come up with this second post sooner, but I trusted Blogger to hold on to my draft version and, of course, Blogger ate it. I hope it was tasty, Blogger! (If you don't know what I am talking about, then you might not have read Part One, where I went over MK's checkered linguistic past.)

The Intervention

So, what is different now? First of all, we got a new Speech and Language Pathologist (SLP). The SLPs that MK has seen over the past five years have generally appeared to be at a loss as to what to do with MK. We sought out the ones who were specialized in communications, and not speech production, and we even worked with one who was the well-published head of a university department, but none of them really seemed to have any more idea of how to help MK than we did. They flipped between play therapy and grammar drills with no noticeable effect. We found them useful as sounding boards for our own specific questions about things like how to respond to echolalia, and as book recommenders, but that was about it.

The new SLP is different. Some of her core training comes from Reuven Feuerstein, who she studied under in Israel. Her day job (MK has been seeing her privately on Sundays) is as an SLP in a school for developmentally disabled kids that is entirely based on the Feuerstein approach. Feuerstein's big idea is Structural Cognitive Modifiability, which basically states that you can not only teach thinking, but you can actually permanently change the way the mind processes information as a result. Another set of techniques she uses come from Naci Bell, who came up with Visualizing Verbalizing. This is a teaching technique aimed at ASD kids, in which they are taught to visualize events as scenes, with an emphasis on gestalt, or seeing the main idea in context. As they get better at visualizing in a coherent way, they are encouraged to draw on their visualization when verbalizing.

(I can't help but notice the similarities between these techniques and what I gather is going on with Brain Engineering, which is what MothersVox from Autism's Edges describes in her post, Trying Something New. Sweet M is likewise showing great progress, which warms the cockles of my stony heart, in part because, ever since I started reading Autism's Edges I've felt there were similarities between Sweet M and MK.)

With the new SLP the sessions are only one hour long, once a week, but she packs a lot in.

First they do Feuerstein "instruments," which are all about manipulating purely visual information. MK has just finished working on an instrument that involved five rows of pictures. Based on the pattern of pictures in each row, you he has to deduce, by inference, which picture from a separate pool of pictures belonged to each row. In addition, at the end, he has to say whether any of pictures in the pool did not, in fact, belong to any of the rows. So this involves holding five inferred answers in memory and comparing them to the pool to make a secondary inference. They do this many times, and go faster and faster each time. They do this for about ten of fifteen minutes.

Then they move to listening to short stories and identifying the main idea. They started off with identifying a main idea that was actually stated in the text, but as soon as MK had mastered the inference instrument described above, she switched him to a different set of stories in which he had to identify a main idea that was not actually included in the story but could be deduced by – you guessed it – inference. This is another ten of fifteen minutes for ten short stories.

Next they've been running though the who, what, when, where, why, how questions, with MK listening to statements and deciding which kind of WH question the statements correspond to. That's short, probably less than five minutes.

Then it's time for Visualizing Verbalizing. MK gets a picture that the SLP can't see. MK then has to describe it to the SLP. In the end, the SLP is going to describe the picture back to MK, and then they will look at it together, so MK understands that he has to make the SLP understand the picture fully. It's interesting to see how MK has progressed with this. For example, at first, when the SLP asked MK to tell her about the colors, he used to say, "I see back and yellow and green and red and brown…" Now, when she asks him that question, he says, "The boy's jacket is brown and his mittens are yellow…" What is even more interesting is the way that, after a couple of months of doing the short stories described above, when MK had gotten really good at naming the main idea, the SLP gave him his Visualizing Verbalizing picture card and said – you guessed it again – tell me the main idea.

I'm sure you are getting tired just reading this, but there is more. Now it's idiom time. They do these in sets of 50, building up 10 at a time, using cards. She starts off by getting him to guess the meaning from three possible choices. Usually that's not hard for MK as two of the choices are always close to the literal meaning, so the third answer is obviously right according to – need I say it – inference. For example, "When you tell someone to get off their high horse you want them to: a) get down from a high place; b) stop acting like a snob; c) put their horse in the stable." If you've got your inference working, you can spot the right answered without even knowing the words "snob" or "stable."

Last they usually play a board game like "Semantically Speaking," in which every turn requires answers about more idioms or homophones.

This all sounds kind of grueling written out like this, by MK loves it. He bounces out of that room just glowing with success. That is probably mostly because the SLP makes sure that the level and speed of advancement is adjusted so that MK gets 80 to 90% right answers. What is more, she responds to his answers in such a way that he perceives himself as getting 90 to 99% right answers.

The Changes

I was just talking to MK's pediatrician (who I must say is a real rock -- he sets up appointments every couple of months, just to talk to me, to listen to what is going on, to encourage me to be a pain in the butt at school and offer to write any letters that might be helpful) and I told him that Sasha was making incredible progress with language recently and also we are really impressed by his SLP, but we can't be sure that the two are connected.

That just the way it is with these things. Someone, and I am pretty sure it was someone on Autism Hub (would it ever be nice if all the archives of all of the blogs on Austim Hub were searchable from some magic Google page) wrote this really good piece on evaluating interventions. They said that everyone -- ND, DT, whatever – develops in fits and starts. There are periods where they rush forward, and periods where they appear to go backwards. This is the way the human organism works. And if you happen to start a new intervention at the same time as your kid is surging forward, the intervention will appear to be working. If you start the same intervention when they are slowing down or "regressing," it may appear to be useless or worse. What is more, we can often have two or three different interventions going on at one time, and some things are going to be more effective in combination. So I would be very reluctant to say MK's new SLP is causing MK's linguistic progress, but if she's not at least contributing, I'd be surprised.

So here's what going on. A couple of months back MK started this massive surge in vocabulary. He just started using new words and expressions in every other sentence. The big change was that he was doing it deliberately and enjoying it. He suddenly found that he could retrieve all these words and choose to use them, on the fly, just for fun. Then, all of a sudden, we got humor. MK used to say silly things for a giggle, but they were generally non-sequiturs. These new jokes made sense, had timing and were actually funny. Just as I was getting used to that, he started in with the puns. That's where we are now. Puns right left and center. A year ago, just hearing puns confused him and, if they were explained to him, they actually made him cry (MK does not like cognitive dissonance). Now he is playing with every word that comes along. The other day we were walking past Home Depot and there were all these bags of potting soil sitting out on the road. "Let's steal some," I joked. "No," shot back MK, "they're dirt cheap anyway." – Pun and idiom in one fell swoop!

Where we live, there is a mountain with lights on it that look like a letter M. I joke that it stands for my first name. MK says, "Yeah, it's your signal because you're Superman. No, you should be Super-Mar," those being the first three letters of my name. Then he goes on, "But it would be more fun if you were Super-Mars!" – a slight pause – "You know Mars has another meaning? That's the name of a month in French. It means March." You can just hear the neurons crackling!

And that is not all. MK has never been able to narrate an event that happened in real life. For some reason, he can recount entire novels, giving the chapter numbers as he goes along and reproducing the dialog, but the question, "What did you do in school today?" has always been answered by "I don't know." Now, all of a sudden, it's, "Two periods of Language Arts, one period of math, PE and an assembly. We were doing parameters and areas in math. In Language Arts I had to compare Iceland and Greenland (with prompting, details of the comparison emerge). The assembly was boring because they were playing loud music and I didn't like it." This is completely uncharted territory for us. In fact, I just got through demanding a home-school communication book at MK IEP meeting, because there was no other way for us to know what happens at school. Things have changed.

And then there is sudden capacity to understand and talk about systems in the real world. About a year ago, we saw a bunch of log rafts on the river, and I asked MK where he thought they were going. "I don't know," he answered, "to a factory." Wow! I was impressed. MK didn't usually show that kind of insight. "And what do you think they are going to make the logs into, at the factory?" I asked. "I don't know," MK replied. "Trees?"

It's harder to give short examples of general comprehension, but compare that to the conversation we had recently when I mentioned that it was possible for babies to be born at home. "So what happens," he asked, "Does the doctor come to the house?" And when I told him about midwives, he wanted to know, "What about the machines? Does the midwife bring the machines from the hospital?" There is a whole lot of inferring going on!

Backwards

This week has been lots of fun at school for MK. They watch movies, they go to the park, the kids get to hang out with each other, the teachers get to spend some relaxed time chatting with their students -- it's a good time for all. And at this time of year teachers decide to see the best in the kids that they are saying goodbye to. They give them praise and encouragement for next year. There are gifts and cards. It's an incredible community-building experience.

I have just one question: why do they do this at the end of the year, rather than at the beginning of the year?

Imagine how it would be if, in September, instead of laying out strict rules about how binders and desks are to be maintained and subjecting the kids to all kinds of tests, they took the class to the park. Imagine if they started the year by talking about what was right with the kids, instead of trying to identify what is wrong. Imagine if the first thing they did in the school year was let the kids have fun with each other and the teachers.

Ah well, it doesn't hurt to dream.

Speaking of Speaking

I have been meaning to speak a little about MK's speaking for a while now. It's pretty exciting to see new corners turned as, for example, Mom-NOS noted while telling us of Bud's latest linguistic leaps. For Bud it was inference and lateral thinking that came online, for MK, it's all about vocabulary.

MK's linguistic history is the sort of thing that PhD dissertations (or Ripley's Believe It or Not stories) are made of. His mother is Japanese and his father is a Japanese speaking Anglophone. So, when speaking to each other, we speak mostly Japanese. Following the standard advice, when MK was born, I spoke to him in English while his mother spoke to him in Japanese. To make matters a little more interesting, MK was born in Paris, so the TV and everything outside our apartment was, of course, in French. That is why we never connected the fact that MK failed to pick up more than a few words with the way he liked to line up his toys in a row or the way he covered his ears every time the toilet flushed or an appliance whirred (this last thing we innocently called his "Rainman impersonation"). At one point we switched entirely to Japanese for a few months to see if that would make things easier for MK. It didn't. So with MK still limited to single-word jargon at age four, we packed up shop and moved to New York, where --everyone assured us-- the relative linguistic homogeneity would soon snap him out of it.

Needless to say it did not. Various doctors and school personnel told us not to worry, right up to age six, at which point we finally started seeing a speech and language pathologist (SLP). Nobody, not even the SLP, who you would have thought would be on the lookout, asked us whether MK knew how to play make believe (he did not), or whether his idea of a fun afternoon was visiting and closely observing a roster of dozens of No-Parking signs around the neighborhood (it was), or whether he showed any interest in other children (he didn't), or whether he ate foods that were not white (of course not) or was capable to touching things with textures (what do you think).

At that same time, because he was in grade one, he was learning how to read. Soon he could recite entire books and, while he did not appear to know what they meant, it was the key that at least partially unlocked speech for him.

-- Heavens to Betsy what a lot of back story. Sorry about this; I'll try to speed it up. --

By nine, with three years of remarkably ineffective speech therapy, he reached a point at which he could express just about any fairly straightforward idea, given enough time and cooperative interlocutor. But a lot of the purpose of language was still obscure to him. I remember a written assignment on penguins that at age eight or nine went like this:

• Penguins are animals.
• Penguins are not animals.
• Penguins are black.
• Penguins are orange.
• Penguins are not black.
• Penguins are not orange.
• Penguins eat food.
• Penguins not eat food.
• Food eat penguins.
• Food not eat penguins.

I have a feeling that was not exactly what the teacher was looking for.

Vocabulary was also tough. Words just wouldn't stick. MK could look at a picture and repeat the word twenty times in a row, and have no recollection of the word he had been repeating just five seconds later. He would also loose (or temporarily fail to retrieve) fairly simple vocabulary. At age ten, "road," would sometimes become "that car-driving place – you know, it's back" and "toaster" might be "toaster," but more often it was "that toast-making thing."

Still, I suppose somewhat remarkably, MK was doing OK in school. He understood things. He adapted. He compensated. At age ten he got Bs on all his statewide standardized tests, including reading and essay writing. I guess it helped that his teacher taught to the tests.

This year he made some advances. But up to a few months ago they were linear. Then something changed and they became exponential.

-- But you know what? This post is too long, so I am going to stop here. In the next post I'll carry on and tell you about his new SLP and the weird and wonderful things that are happening. --

(Oh, I just love it! I feel like Fox News – "Radiation cloud makes going outside certain death for half the nation. Tune in to Fox News at 8:00 and find out which half.")

Uneducated guess

Reading Kristina's blog this morning, as I do most mornings recently, my armchair theory of autism causation popped up in my mind again.

She quotes Kati Wright as saying:

Despite receiving high quality early intervention, my son lost every word, every skill he ever had within a year of his diagnosis. Christian lived in constant pain for the following two years with a destroyed immune system and endured bouts of severe colitis, pnuemonia, staph, strep and cellulitis, while hardly eating, barely sleeping, only screaming. Tens of thousands of parents are living this nightmare along with me. We are understandably angry at the glacial pace and narrow focus of autism research.

And I am struck by how different that sounds from MK's childhood which was all forward progress. It was different progress from the progress of his peers, but we never got the sense that he was going backwards, and other than the usual string of stomach bugs when he first went to daycare (which he was kind enough to share with his mother and father) he was never sick. I am convinced that MK has developed just as nature intended him to, a wonderful expression of the DNA he was born with.

When I think about this, I also think about childhood disintegrative disorder and about the Autism Twins blog and mitochondrial autism, which is apparently a condition in which insufficient mitochondrial function is at least a contributing factor to autism.

Autism is a name given to a cluster of behaviors and modalities of processing. It is tempting to assume that people who match up with this cluster of behaviors and modalities do so because they share some common neurocircuitry. I would go as far as to say that, if we could actually observe such things, some autistic people would probably be found to share at least some circuitry that would be distinguishable from neurotypical circuitry.

But I very much doubt that all people with an autism diagnosis would be found to have identical wiring, even if they shared very similar behaviors and modalities. That is because, in living things, similar variations can often have different causes. People jump up and down both when they've banged their thumb and when they've won the lottery. People get depressed because their serotonin production is too low, and because their serotonin reuptake is too high. People can be thin because they move around a great deal, or because they eat very little. Same appearances, different causes.

And seeing that the modalities and behaviors that were are talking about are anything but homogeneous in the first place (in fact, there is at least as much variety in the behavior of autistic people as there is in the behavior of NT people) the idea of homogeneous causation seems pretty unlikely.

If, then, there is probably more than one cause for autism, it seems fitting to me that there be more than one set of investigations going on. More importantly, if there is more than one cause for autism, then success in identifying or implicating one cause does not mean that that hypotheses involving other causes are invalidated by that success. It is possible for it to be true that autism is hereditary and part of normal genetic diversity and, at the same time, for it to be true that autism is caused by an immunological disorder during development of the brain. It wouldn't surprise me if there were a dozen or more causes, and probably hundreds or thousands if you count each combination of genetic variation as a separate cause.

That said, the real utility of having a term like "autism" has nothing to do with causation. The utility of the term is that it helps us get an idea of what we should do. We know that autistic people are often more happy and successful with certain types of support. We also know that support has been grossly inadequate (if not actively harmful) in the past. That should lead us to conclude that current support is unlikely to be optimal. So that is something that we could be working on. And that is the kind of research that would benefit just about everyone with autism.

So, in short, I think that people should go ahead and research whatever seems likely in terms of causes. There may even be some cases of autism that have causes that make them amenable to medical intervention. Other cases don't have a "cause" any more than blond hair has a "cause." It would be good to demonstrate that too. It's all good. In the meanwhile, no matter what the etiology, most autistic people can benefit from some support or accommodation. So, as and entirely separate issue from causation, and without splitting into camps depending on which cause seems most likely for the autism closest to our own lives, let be sure that the lion's share of the energy is spent on support and accommodation.

Got Theory of Mind?

Blogging on theory of mind, Joey's Mom wants to know what this rot is. Good question.

She sets it out nicely:

In a basic simplification, I understood that the "theory of mind" means that one person can understand that another person has a mind. It is being used as a shorthand for the ability to pick up and react to other people's emotions, because you understand that they HAVE emotions, thoughts, feelings, beliefs, etc., and that these emotions, thoughts, etc. might be different from yours.

Then she points out that:

Setting aside that I know a lot of non-autistic people who have a lot of trouble with the second part of that, I haven't yet met an autistic person who didn't have these abilities. They might not be able to react appropriately to other other people, but that seems to be more a problem of processing and accessing proper response.

I agree 100%. Our guy, if anything, is over empathetic. When he was a kid, if he was riding a bicycle and he saw someone else fall off a bicycle, he would keel over immediately. If someone was being shot at on TV, he would shout, "They are shooting at me!" He could not watch baseball because, when either side lost, it would be more than he could handle. At the same time he failed the Sally Anne test and therapists duly worked with him on theory of mind.

Joey's Mon goes on to say:

People who are not autistic seem to come up with the odd ideas when they just can't get the fact that there are people in the world who cannot communicate orally- or even verbally. They seem to have their own problems with "theory of mind" in that they can't understand that there are other ways to communicate.

I agree, and I think it goes beyond communication. I think many people have trouble imagining minds that work differently than their own. Recently, I told MK the story of Icarus, he didn't much care about the moral, but he would not stop asking about how Daedalus dealt with his grief at seeing his son die before his eyes (something I had not mentioned in my condensed version). Of course, no professional would notice this because they are always too busy pointing out inappropriate fixation on details, preservation and lack of inferential thinking (because the things he infers are often different from what "normal people" infer).

If you grew up in a town that had only red roses and had never heard of any other kind, and then drove quickly through another town that had only yellow roses, you would be likely to say that the new town lacked roses. In the same way, psychologists have developed all sorts of tests to determine when and how NT kids start modeling other people's minds. So when a kid comes into their office, they have a quick look for the typical signs of that typical modeling, and if they don't see it, they conclude that it is there. The idea that it might be there, but different, never occurs to them.

The blogger also comments:

Theory of Mind seems to be just another way of trying to depict autistic people as something less than human. Of taking away their sense of humanity by taking away their sense of community. It is easier to make an object of a person you believe is making an object of you.

That certainly would make sense, but I'm not so sure about the motivation. I guess all psychological musing contains an element of objectification. That is, after all, what we are asking of psychologists -- we ask them to give us an objective description, so that we can at least pretend that what we do for our kids is rational.

We need to keep in mind that simple models of anything so incredibly complex as the workings of the human mind are bound to be wrong. The task of the psychologist is a bit like that of the weather forecaster. We know they are going to be wrong much of the time right from the outset, but we still hire them.

I don't think they produce bad models with the goal of objectifying people. I think it is the consumer who asks for objectification, and the bad models represent a best effort to meet that demand.

Nor am I ready to abandon the line of inquiry and intervention that goes with theory of mind. MK needs help in following conventional clues about what is going on in other people's minds and behaving in an interactive way that takes that into account. When he turns his back on classmates or complains about them when they are standing right there, it is clear that, at that point, he is not concerned with the sort of things that will be going on in their minds.

This morning, he started a conversation with, "You know when the bunny goes up in the air, and then it turns over. That's so funny." I'd never seen the video clip in question, and MK had failed to take the contents of my mind into consideration when starting the conversation. MK's going to have less satisfying conversations if he does not get better at this.

From the other side of the coin, MK will tell me the same thing dozens of times. If I call him on it, he admits that he knows that I know. Given that he himself gets very annoyed when people tell him things that he already knows and given that he very much wants to make me happy, it seems odd that he does not make the content of my mind a determining factor when deciding what to tell me.

Bottom line, it is clearly wrong to say autistic people lack theory of mind. But it is also useful to note that the social interactions of autistic people are sometimes different from the social interactions that would be predicted by the theory of mind model in NT people. If one of the goals that an autistic person has is to be able to interact with NT people in a way that is regarded positively by NT people (obviously this does not have to be a goal at all times, but it sure can be useful), then the theory of mind model is going to be a useful benchmark and a useful way of discussing behavior.

Coming up for air

I while back Mothersvox mentioned how spring was stirring things up for her daughter and how this change of season thing seemed to have an impact on many folks with regulatory issues. I mentioned that the change in seasons might be linked to the incredible strides forward that MK has been taking in the past month or so. But the tug of the seasons affects everyone, and not just the neurologically exceptional. So that could be what is behind my recent change in mood. It could also be the very fact that MK is doing so well, or the fact that his dreaded IEP is over and done with, or the fact the whole school year is almost over, or the fact that next year's teacher is reputed to be good. Whatever, it is, I'm feeling better.

And as I get used to this feeling, as I notice that I can stay sleep right up until the alarm rings, as I find that I can go for hours (or at least several minutes) without thinking about MK and his education, I look around me and I notice that I have a life of my own that is not necessarily entirely defined by MK, or at least, I have the potential for a life of my own, and I have been ignoring it -- letting it slip away unattended. I'm going to try and do something about that. It's going to involve some scheduling and some asking MK's mother to pitch in on some of the business of running our guy around to the various prodding and poking services that we make over 20% of our income to each month.

And while my motivations are entirely selfish, I imagine that my making myself a little more rounded, I will also make myself a better father.